mlepp0416
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First I want to THANK all of you who added Tom to your thoughts and prayers! He just had an appointment with his oncologist who is so impressed with the outcome of his cancer.
His numbers continue to decrease from the very high levels that he was as back in December ’09. His bilirubin is 3.8 (3 and under is normal). His Alk Phosphate is 859, still high but much better than 1958 it was at a while back!
His oncologist’s comment was “Who would have thought that it would turn out so well back when we started seeing you as a patient!”
He is not scheduled for a scan until July. The tumor continues to SHRINK and we’re hoping that the Interventional Radiologist will be able to get a stent internally so Tom can lose the drain bag! He is not yellow at all except for a few traces of yellow in his eyes.
Both Tom and I want to thank each of you for your support, thoughts and prayers during the past and I will keep you all posted as things develop, good or bad!
Hugs,
Margaret and Tom
GO WITH GOD AND KEEP KICKIN’ THAT cancerSusan and Harmony’s family:
I too am saddened by Harmony’s passing. She was an inspiration to me and her positive attitute and zest for life was evident in all of her posts. She will not only be missed by her family but also by her CC family on this board.
I know that she is at peace and no longer suffering with the many issues that having CC can bring. My thoughts and prayers are with her family. I know she will be missed by her husband and her young son. She will live on in your heart and memories.
Go with God.
Hugs,
MargaretOH My, what a horrible turn of events. I was my husbands advocate while he was at the VA Medical Center in Milwaukee and I had to STAND UP to the doctors more than once to get what he needed. Since your mom can’t speak for herself someone has to be willing to take a stand and get some answers.
At one point while Tom was in the hospital, his room mate went to the bathroom (pee) on the floor by the sink in the middle of the night then put paper towels over it. When I walked in at 7:30 am I could smell the urine. By 9:30 countless nurses and staff had been in and out of the room. The smell was so bad and no one was cleaning it up (you mean they could not smell it?) that I finally went and found the head floor nurse and brought her into Tom’s room and pointed it out to her. It was cleaned up right away, but I filed the complaint because people are in the hospital to get well and then to have pee on the floor for over 6 hours and staff is just ignoring it?? The head of the hospital then came to see me and he was moved to a different floor to a private room. If no one says anything, nothing will be done. I’m with Lainy on this – get to the head honcho of the hospital and get some answers, or make arrangements to MOVE your mom out of that facility as soon as possible!
Prayers are coming your way.
Hugs,
MargaretMy husband Tom’s doctors that he has now say that IF he had had chemo AFTER his successful liver resection in June ’08….he most likely would not be in the position that he is in today with a inoperable tumor.
We will never know because even though we questioned it his oncology team at the Veterans Medical Center in Milwaukee told us that he did not need chemo because they had gotten ‘clean’ margins…18 months later he presented with jaundice and they found an inoperable tumor. His then oncologist told him that radiation/chemo would do nothing and that he would be gone in 6 months at the most…we did not listen to that and after 28 rounds of radiation and then oral chemo (Xleoda) Tom is still here some 20 months later.
My advice (and I am by no means a medical professional) would be to undergo chemo…
Hugs,
MargaretScott:
As for your doc’s telling you that you have 4 to 6 months to live??? To that I would say “Hogwash!” My husband Tom was told in Dec. 09 that he had 6 months at the most and that Radiation / Chemo would do no good. I did NOT listen to that and we sought 2nd, 3rd and 4th opinoins. When I helped Tom shower I told him to turn around cause I wanted to see his butt – and then said “Yep, I was right, there is no expiration date stamped on your butt”.
Our other opinoins agreed that his tumor was inoperable because it involved the hepatic artery…he’d already had a successful left lobe resection 18 months previously. Tom underwent 28 rounds of radiation, then oral chemo (Xleoda)…and his tumor is shrinking! He is still her some 20 months AFTER his ‘then’ oncologist told him he would have 6 months at the most.
The power of prayer, positive thoughts and positive outlook and GOOD oncologists can do wonders. If we had listened to that oncologist and did nothing, then yes, Tom would have passed in that 6 months. Instead we took the bull by the horns and found doc’s that were aware of CC and who were willing to take a chance. He currently has an external drain to drain off the bile that was collecting in his body (tumor is blocking the bile duct) but his interventional radiologist thinks he may be able to get a stent internalized within the next 2 months as he is seeing a small opening in the bile duct (the tumor is shrinking).
Tom currently in not on any chemo…he did also do about 4 rounds of IV chemo (Gemzar and Cisplation) when a radiologist miss read a scan and told his onc that the cancer had spread to his groin…on the next scan the ‘mass’ was gone…so his onc discontinued the IV chemo. He goes for a scan this coming Friday and we are hoping that if there are any changes it’s that the tumor is even smaller than it was on the last scan. His ocologist feels that the radiation killed the tumor.
So when a doc tries to put a limit on how long one can live with CC, I say RUN to get another opinoin! Granted we do have people who have passed rather quickly from this cancer, but we also have many who have outlived their oncologists predictions! My husband Tom being a prime example!
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretJackieh:
Welcome to the site that no one really wants to join. My husband Tom had a left resection in June ’08. They got clean margins and when we asked about chemo/radiation, his doc’s said he didn’t need it w/clear margins. They were wrong, so it’s a good thing that your Sister got chemo “Just in case”…My husband also encountered a reoccurance some 18 months later when he turned jaundiced. His then oncologist told him that radiation/chemo would not help and told him to go home and get his affairs in order, that he had 6 months at the most.
I did not listen to that, and took my husband for 2nd, 3rd and 4th opinoins. Thank heavens I did! Cause they agreed with the inoperable part, but stated that radiation/chemo ‘could’ help him. He underwent 28 rounds of radiation, then oral chemo, Xledoa and when a radiologist read a scan wrong, they inserted a part and he started IV chemo (Gemzar and Cisplatin) and he had around 8 infusions…He lost a lot of weight and is slowly gaining that weight back. His new normal for his numbers are high, but his tumor markers are down. He currently has an external drain bag that collects the bile, keeping his bilirubin down to about 6,000. His alk phosphate remains high at about 850 (down from 1958) but apparently these numbers are his new normal.
His oncologist told us at his last appointment that this turned out way better than she expected back in Dec. ’09. He is now going about 2 months between appointments with his oncologist, and gets his biliary tube exchanged every 4 weeks. His interventional radiologist feels that he may be able to get an internal stent in within the next two months. That would be awesome cause then he can lose the external drain bag and feel even more ‘normal’.
All this is leading up to the fact that he is still here some 20 months after he was given ‘six months at the most’.
Things to do or not do during chemo….eating may be difficult because the chemo changes the taste buds. If your sister can’t eat, she should drink Boost or Ensure. Her cancer center should be able to give her samples and coupons.
Eat 6-8 small ‘meals’ per day rather than just three.
Focus on high protien foods. Whole milk, half and half in cooking and in malts/shakes.
Cheese, peanut butter are good sources of protein.
Accept help when offered. Do one chore a day to keep yourself moving. Sleep when tired. Ask for help if/when you need it.Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Mazduc:
The hardest part of being a spouse and caretaker is to admit that perhaps there IS nothing more we can do! I have been there many times in the past three years since my husband Tom was diagnosed with this evil cancer. And there have been times when I thought that I would be calling Hospice. I think that my Tom has a guardian angel watching over him because each time he has bounced back and currently we are on top this roller coaster ride! And I am hoping that he’s able to be with me for as long as God sees fit.
I know in my heart of hearts that someday this cancer will take him from me and I know that I too will have to make the decision to call in hospice. The most that I can say is that “It Sucks” to have to be the one to make that decision. But do not chastize yourself. You DO want what is best for Lori and you want her to be comfortable. She knows you love her.
Just as Isselure does, when our loved one gets to the point of calling in hospice – all we want is for them to not be in pain and be comfortable as they pass into our Lord’s arms…to their special place in Heaven.
Go with God.
Hugs to both you and Isselure!Margaret
Mark:
My thoughts on chemo….my husband Tom had a successful left lobe resection in June ’08…they got clear margins. When we discussed the next steps, I questioned his docs about radiation/chemo and they did not feel that it was necessary because they had clear margins. Knowing what I know now, I certainly wish I had demanded at least a few rounds of chemo. 18 months later, Tom presented with Jaundice and they found a new tumor that involved the hepatic artery, therefore it is inoperable. His then oncologist told us that radiation/chemo would not help and gave him 6 months (at the most) to live.
We did not listen to him and sought other opinoins. He did undergo radiation and oral chemo (Xleoda) and then Gem/Cis for about 4 rounds. To date, he is still here with me. His tumor is shrinking and all his numbers look good. And, by the way, he is now starting the 20th month of life since those words “You have 6 months at the most”.
Tom’s oncologist and cancer team have told us that if he’d had chemo after his successful resection back in ’08 he most likely would NOT be in the position that he is in today. So, my thought is that EVERYONE who hears the words cancer SHOULD have at least a few rounds of chemo (oral or IV) to kill off any stray cancer cells that are most likely floating around in the bloodstream…waiting to attach somewhere and start growing again.
But – it is a personal decision and only YOU can make that decision. Whatever you decide, I’m certain that it will be the correct choice for you. One thing that I have learned since hearing those words “Your husband has cancer, and it’s Cholangiocarcinoma” is that HIS wants and desires and need come first and it does not matter what I want because it is his body and only he knows how he feels.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretJen:
There are days when we need a good cry and a glass of wine. You have earned it so go ahead and indulge – you will feel better afterwards!
Hopefully they will get your dad’s pain under control. I know my husband Tom hates taking his pain medication but I insist so that he stays on ‘top’ of the pain before it gets unbearable! Those men – I believe that they think they are showing a weakness if they take pain meds!
Go with God…and I’m part of that Tidal wave of love and support!!!
Margaret
Scott:
My thoughts and prayers are with you and your family. I know that your Mum and Dad are treasuring the moments that they still have with each other, and for as long as you have your mom, let her know that you love her.
Go with God,
MargaretMy thoughts and prayers are with you and your family. So sorry to hear about your Mother-in-laws passing. She is at peace now and she will be remembered in your hearts and minds.
Hugs,
MargaretBetsy: My husband Tom had a ‘bile leak’ from the cut side of his liver for 7 1/2 months after his Liver resection. His ‘leak’ was the longest that his surgeon had ever seen. Hopefully yours will consider healing over soon.
Margaret
I had to laugh when reading these post about getting new vehicles. My husband Tom has an inoperable tumor in his liver (CC) and has already undergone a resection. He was given 6 months, and now some 20 months later he is undertaking ‘remodeling’ of the garage and building himself a workshop. He may never be able to use it given his condition, but at least it gives him something to focus on rather than CC. So getting a new workshop or a new vehicle – it’s all GOOD!!! Focusing on the positives rather then on the negatives is ALWAYS good.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Debora:
You may want to repost this under ‘Introductions’…
Welcome to the best site for CC caregivers and patients.How old is your grandma? Where is the tumor?
Margaret
John:
My now 64 year old husband was diagnosed three years ago an in March of ’08 had a resection where they took out 3/4’s of his liver and gall bladder. In Nov of ’09 he presented with Jaundice. His then oncologist told him that there was nothing they could do and that Radiation and Chemo would be of no use, that he should just go home and that in 6 months he would be dead.
I did not accept that and told him to pack a bag, we were seeking other opinoins. We went to Marshfield first, and one of their oncologists agreed that although the tumor was inoperable (it involved the hepatic artery) she disagreed with the no radiation/no chemo. We then went to see his original surgeon and she also agree with the inoperable, but stated that with Tom’s fight and with my fight, if anyone could possibly beat this it would be us. We then went to the Vince Lombardi Cancer Center in Green Bay and met with the Radiation and Oncologist there. After 28 radiation treatments and then a few rounds of oral chemo (Xleoda) and about 4 rounds of IV Chemo (Gezmar and Cisplation) Tom is still here some 20 months later.
You can choose to listen to your Mom’s doctors or you can get on your fighting gear and get your mom to other doctors who are willing to take a chance that there IS something that they can do. And never forget the power of prayers! If we had listened to Tom’s ‘then’ oncologist, and given up, I firmly believe that Yes, he would be dead by now. Instead we got on our fighting gear and gave it all we had. Has it been tough? Heck Yeah…. Would I do it over again? Yes, in a heartbeat.
We have been through so much these past three years, but I would not trade it for the world. As Tom’s caretaker, there have been times when I only wanted it to be over for his sake. But now that we are through the worst (those 6 months…waiting for the end) part of the journey…we are glad that we did not take ‘No’ for an answer….instead we fought back and found doctors that at least were willing to give us hope, and doctors that took a chance…because in the end that is all we wanted…someone to give us a glimmer of hope and it has turned out way better than his current oncologist ever thought it would.
I know that eventually CC will take Tom from me and his family, but meanwhile we continue to build memories that will be forever dear to me. I will live out my life knowing that I did everything in my power to enable this man that I love to live his life to the fullest, to share in the joy that he brings to so many people.
Rule number one: Never take NO for an answer
Rule number two: Find doctors that are willing to take a chance on treating your mom.
Rule number three: Pray, pray and pray some more
Rule number three: Stand by your mom, be there for her, give her help when she needs it, just hold her hand at other times. Let her know that you love her.
Rule number four: Be strong and go with your mom to her appointments, ask those questions about what can they try, what can they do. What options are there. Have they ever treated anyone with CC. If not, can they recommend someone who has treated CC, or can they tap into someone with experience with CC.I hope these words help you in your journey with your mom.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
Margaret
